It was difficult to get Mitch to eat. His appetite took a significant dive mid-December and with few exceptions it never really returned. His perfusion was so poor that, even if he felt like eating, his digestive system couldn't handle much of anything. Toward the end my son would throw up whenever he ate. That was so hard to see. His body, already weak and frail, struggled to recover after each violent episode.
Natalie had prepared some soup for Mitch and I asked if he wanted to eat in bed. This time he wanted to walk to the kitchen so I held my sons hand as we carefully made our way. He was tired but determined to be independent as long as possible. I love him. Mitch arched his back as he walked to keep his balance because DMD had already stripped his strength away. He was getting so frail and his interaction with the world increasingly brittle.
Ever since he was a tiny little boy we had a very special manner in which Mitch and I held hands. As I softly held his hand escorting him to the kitchen, he moved his hand to hold mine in our special way. The lump in my throat, which never seemed to leave, began to grow. I smiled softly at him and put on a brave face but inside I was falling apart.
Mitch didn't get sick this day – for which I was grateful.
As I looked at my little boy I couldn't help but see something else. I saw my brother. I didn't see someone who looked like one of my brothers, I saw a little boy who was my brother. Toward the end I saw in Mitch things that startled me … I will write of those another time.
I have spent much of my life contemplating the age of a soul. How old are we really? No one really knows, I suppose … at least not here. But when I am quiet and thoughtful I get a sense we are older than we know. And when I think of my son, my brother, I get the recurring impression I am Mitchell’s younger brother and that he was teaching me.
When we checked Mitch into the emergency room we knew things were serious, but we didn't grasp how serious things were until nurses started calling doctors and doctors started calling other doctors. Everything went from routine to rigorous in a big hurry. My little son was crashing and by the time he was moved to the Cardiac Intensive Care Unit (CICU) he was pale. He was different.
Natalie and I followed little Mitch to his CICU room but waited just behind the glass wall for things to settle. We didn't want to get in the way as the medical team was quickly trying to stabilize him. Mitchell’s eyes grew big as he watched this concerned medical team scurry about tending to his care. As I peered through the glass wall my heart sank and my soul ached. There was my son, my little soul mate, and he was in big trouble.
By the time Mitch was stabilized the ER doctor (Dr. Herman) who had escalated Mitchell’s case to the CICU came to our floor to see if Mitch even survived. When he walked in our room and saw that Mitch was still alive relief washed over his face. I was so touched that this doctor actually cared. My son wasn't just a case number, or a biological puzzle to solve, or body to fix … Mitch was a little person who had feelings and family who loved him … desperately. Humanity and compassion was clearly not lost on this doctor and his short visit, to show that he cared, did more for our hearts than he will ever know.
Dr. Herman knew what to be and when. He was all business when trying to save Mitchell’s life and get him into the CICU. But after the emergency passed he was human … he cared. I can say the same about everyone at Primary Children’s Hospital who cared for our son. They not only cared after him, they cared about him.
Within a few hours we would learn that Mitch was experiencing end-stage heart failure and that he had days to live. Weeks if he was lucky. We weren't sure if Mitch would leave the hospital alive.
During our week-long stay doctors and medical staff would occasionally comment how moved they were by our love and dedication toward our son. Natalie and I slept together on a couch made for one. We never really slept – but we tried to rest. These doctors told us that some children are left for extended periods of time and their parents seemed emotionally disconnected. What we thought was normal love and attention seemed unusual or uncommon to them. My heart broke for other children who were left feeling unloved.
When we told Mitchell he would need to stay at the hospital for at least a week his eyes filled with tears. He didn't want to be there – he just wanted to be home with his family and to play with his friends. By the time we left the hospital, having been discharged to die at home, my sweet son asked about his homework and wondered if his teacher would let him have a little more time to complete it. With all that he had experienced, doing his duty was top of mind for my son. Mitch, even in the depths of hardship, was an honorable and noble soul. I hugged my son and said, “Oh, sweet Mitchie, don’t worry about that. Let’s just go home and focus on family.”
Family and a pocket of lint was all we had left. Medicine had failed us – there was no cure. Transplant policies failed us – pointing to antiquated philosophies. And our hearts almost failed us – we were so scared.
After everything in our world failed, Pat Furlong with PPMD, and Dr. Cripe from Nationwide (who we honor as heroes) came rushing to help Mitch. But too much was happening too late.
There was nothing we could do but go home and love this little boy with all of our heart. And our hearts trembled.
Family and a pocket of lint … I would rather have that than all the riches of earth and honors of men. I am reminded of Oscar Wilde’s cautionary phrase, “Nowadays people know the price of everything and the value of nothing.” I pray I am never counted among those of whom he spoke … for the value of family is without price. And family has a value for which I would pay any price.
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Here is an image of Dr. Herman examining Mitch in the Emergency Room: https://www.facebook.com/photo.php?fbid=622937311069267&set=pb.192859897410346.-2207520000.1388611662.&type=3&theater
Toward the end of summer 2012, before I left on an extended business trip overseas, my wife and I took our kids camping. I had a certain uneasiness about me. I couldn't put my finger on it. Though used to travelling, this time was different. I was going to be on the other side of the earth for a few weeks and my mind and heart worried I might not see my family again. I knew this time was precious. How precious, at the time, I knew not. In the end, I believe my feelings were magnified because I knew time was short for my son. This was our last camping trip as a family.
We settled by a reservoir near Park City and the weather was beautiful. Whenever we went camping Mitch always wanted to sleep next to me – so as we pulled into the campground Mitch was the first to call dibs to one of my sides. I love him.
The tent was set, the kids were playing and I had just started a campfire when I looked to a nearby road only to find my daughter pushing Mitch on his wheelchair as fast as she could. Mitch laughed and smiled as Laura-Ashley took him for a ride. Mitch loved the wind in his face – but he loved his sister even more. His right knee, bearing a nearly-healed wound from falling a few weeks prior, was a reminder that walking was difficult for him and running impossible. What’s more, it was a subtle reminder that being outside the safety of a wheelchair was becoming increasingly risky for him. There was safety in a wheelchair because he wouldn't trip or fall – but it was also limiting. Laura-Ashley, knowing he couldn't run like others, gave Mitch the next best thing. In fact, it was far better.
I was struck by the beauty of this moment and also by the inward beauty of my daughter. I have always thought she was beautiful on the outside – but, to me, she is angelically beautiful on the inside. I admire her on so many levels. I once wrote of her: “My remarkable daughter: Kind to people who hurt her. Loving to others that hurt. Deeply artistic. Intelligent beyond her years. A fierce protector. A loyal helper. Astute observer. Simply beautiful. Beautifully complex.” She is all of that and so much more.
My sweet daughter had a very special relationship with Mitch. She was always so tender and kind to him – ever looking for ways to keep him safe and feeling loved. In my mind I can still hear her sweet tone every time she spoke with him. It was so unique. So loving. Her love to him was a warm blanket.
I’ll never forget her reaction the night Mitch passed away. It was about 4AM when I went to Laura-Ashley’s room to tell my daughter her little brother was gone. I gently placed my hand on her shoulder and woke her then whispered Mitch had passed away and tears immediately filled her eyes. Her little brother, whom she had given her heart and served with all her might, was gone. My heart, already broken from losing my son, broke even more to see this loving sister, my sweet daughter whom I also loved with all my heart, in great pain. I would have given my life to keep my son alive and save my daughter from hurt and sorrow. I wish death didn't have to hurt so much. But it does. And that kind of hurt is exquisite.
I will always remember this moment of love and service – how my daughter tried to give my son the next best thing but in reality gave him something far better.
Like my son who wished to be like “regular kids” and run free of his handicap, I am sometimes tempted to want for a “regular life” [if there ever was one] free from hardship and sorrows. But like my daughter taught me, the things we gain from adapting to hardships are be far better than what we get when we run free of the hard things that teach us what matters most ... and that is something far better.